(Scroll down for updates on Charlie.)
Charlie was born at home on February 27th at 5:29 p.m. You can read more about the birth here. After about 5 hours we called 911 because we noticed how much he struggled to breathe. In the Emergency Room they suctioned out a lot of fluid from his lungs, nose and mouth. Then they admitted him to the NICU where they diagnosed him with Pierre Robin sequence.
I started blogging about Charlie on the third day we were at the NICU so I could share updates and prayer requests with everyone.
Scroll down for updates from Weeks 7-11
And here are the most recent updates:
- Day 83 – Mon, May 21: We’re Home!!
- Day 82 – Sun, May 20: Go Home Tomorrow!
- Day 76 – Mon, May 14: Charlie’s New Crib
- Day 69 – Mon, May 7: 2 Weeks ‘Til Home?
- Day 63 – Tue, May 1: Surgery #2
- Day 58 – Thu, April 26: Bigger & Stronger
- Day 52 – Fri, April 20: Making Progress
- Day 48 – Mon, April 16: Swallow Study
- Day 44 – Thu, April 12: First Hall Walk!
- Click Here for Week 1-2 Updates
- Click Here for Week 3-6 Updates
- Feel Free To Leave A Comment Below!
Day 83 – Mon, May 21:
Update: After 83 days in the NICU I’m happy to report that we finally got to take Charlie home today! It’s 11:18 p.m. right now and I’m exhausted so I don’t have energy to share all the details of today so I thought I’d just share a bunch of pictures from today. The bottom line is Charlie is home, he’s doing great and we’re so happy to all be home! Feels amazing!
Day 82 – Sun, May 20:
Go Home Tomorrow!
Update: We’re going home tomorrow! Yay! Originally we were scheduled to go home Tuesday. But over the last couple days there’s been a weird thing going on with Charlie’s PICC line. There’s usually a little coil around where where it enters his arm. But the other day we noticed the coil (aka the slack) was gone and it was just a straight tight line.
So they pulled it out so there was slack again but then it happened again! They said it was odd, but apparently sometimes the body can suck in the line. I don’t understand how that works, but it happened.
The good news is there was no complications from it but we monitored it closely. We asked if we could just take it out now since he’s only 2 days away from being done with his IV antibiotics anyway. The doctor said she’d check with Infectious Disease and see if that’d be ok. She said if they are, then we may be able to take it out tomorrow (Monday).
Out PICC Line!
However, Charlie had a say in the matter! Around 1:00 p.m. today, while the nurse was doing her cares, Charlie started kicking and got the line stuck between his toes and just kicked it right out!
“Well, he just kicked out his PICC line,” the nurse said.
“What? Really?” I said. I hopped up and looked at Charlie, who stopped crying when I looked at him and then quickly fell asleep. Apparently he knew his job was done! 😉
The nurse cleaned around where the PICC line was and called the doctor in. The doctor said, “Well, looks like Charlie wants to go home tomorrow!”
She said she’ll order all the supplies so they’ll be ready by tomorrow afternoon so we can take him home! We talked for a while and I thanked her for all the great care her and the NICU team have provided us over the last 82 days. I told her we’re so grateful for this place but we’re ready to go home!
Now time to pack up and get ready for our big day tomorrow. I can’t wait to put Charlie in his new crib:
Prayer Requests: Pray for a smooth transition to home tomorrow. Pray all the supplies come in on time so there’s no delay. And pray that Charlie does well in his car seat on the ride back to Battle Ground…. and give thanks that we get to bring our baby boy home tomorrow!!
Day 76 – Mon, May 14:
Charlie’s New Crib
Update: Yesterday was Mother’s Day so I asked Lacie what she wanted to do. “I want to get Charlie a crib and go home and set it up!” she said. If you know Lacie, you know how much she loves projects. So that’s what we did. A very fitting Mother’s Day Project: Operation New Crib Setup.
So after breakfast we all drove to Babies “R” Us and went shopping for a crib for Charlie. In the car we talked about how excited we were to go home soon (Only 7 days, 19 hours and 14 minutes to go… but who’s keeping track?)! And buying a crib made it feel that much more real. 🙂
We got a great deal on the crib and bedding since Babies R Us aka Toys R Us had a going-out-of-business sale. I think we got the crib, the bedding, a mobile and even FISH FRIENDS for around $300.
So we drove home and setup the crib in our bedroom. It looks awesome because, well Lacie is awesome with that kind of stuff.
Only 8 More Days!
So we’re finally on the home stretch here. Only 8 more days to go. Our departure date is scheduled for Tuesday, May 22… and we might be just a little bit excited about that!
But before we can leave we have to take a bunch of go-home-classes to “graduate” from the NICU! We have a Car Seat Safety Class tomorrow, a CPR Class on Thursday and Charlie has a Sleep Study Scheduled for tonight. We’re also getting trained on how to operate the feeding pump and handle his G-tube correctly as well as physical therapy activities we can do at home.
Speaking of physical therapy… Charlie had a great session today. It was the speech therapist, David, the occupational therapist, Tasha, and me.
We all got Charlie down on the mat and he did great! When we put him on his tummy he raised his head up high and looked side to side. And when David put his finger in his mouth he started cupping it and making sucking motions. It was pretty exciting and the therapists we’re freaking out a little because of how good he was doing!
He’s still not swallowing normally yet but these are all great signs showing that he’s making progress toward that. So we’re all very encouraged. I’ll leave you with a few more pics of Mr. Charlie:
Prayer Requests: Pray for a smooth transition from the NICU to home. Also be praying for all infections to be completely eradicated from his body. Remember, the reason we’re still here now is because he had to be on 3 weeks of antibiotics after his last surgery. So pray for no more infections! Also pray for him to continue to make progress with his sucking and swallowing. And for peace for us as we make the transition home next week! Thank you all for your thoughts and prayers!
“My people will dwell in a peaceful habitation,
In secure dwellings, and in quiet resting places…”
Day 69 – Mon, May 7:
2 Weeks ‘Til Home?
Update: Sorry it’s been a while since the last post. Several of you texted me asking how Charlie is doing, which reminded me I haven’t updated the blog lately! So here we go… tomorrow morning will be exactly one week since he had his back-to-back surgeries; one to remove the devices that were in his jaw and then one to insert a G-tube in his stomach.
Both surgeries went great (see last post below). But then a day or two later his G-tube got infected real bad! At first it was just a little red around where they did the operation, but then a few hours later it got really red and looked pretty bad. His stats started dropping and Lacie said his color wasn’t looking good (I was working when this happened so I wasn’t in the room).
Lacie told me she started praying really hard while the doctors put him on a couple more really strong antibiotics (vancomycin and cefepime). Thankfully within a few hours he turned the corner and was doing much better! The redness went down a lot within 24 hours. After 72 hours they took him off the vancomycin and cefepime but kept him on clindamycin and rifampin.
But that was not fun. This kid has been through a lot already so he’s not allowed to get any more infections! And I felt bad Lacie had to go through that without me there. But thankful he’s doing better now.
We Could Go
Home In 2 Weeks
Since that infection scare last week he’s been doing much better. I still feel like he’s recovering from the surgeries still so he’s been resting a lot. He was on morphine and tylenol from Tuesday to Saturday last week but now he’s off all his pain meds.
And the big news around here is that if all goes well we could go home in a couple weeks! With the G-Tube in we could still go home even if he’s not swallowing all the way by then (side note: I put my finger in his mouth 2 days ago and he started biting down and closing his mouth around it more than ever before, which is awesome!).
The main thing keeping us here at this point is the antibiotics for his MRSA infection. The infectious disease doctor wants him to be on IV antibiotics for at least 3 weeks after his surgery. So that puts us at May 21st. So if we get to go home then we’ll be so happy! We all miss home a lot and can’t wait to take Baby Charlie there.
Prayer Requests: Pray for this infection to be totally eradicated from Charlie’s body. Also pray for his recovery process to be swift and complete. He still has trouble on his left side so we’re wondering if it’s sore from surgery. We want him to be able to lay on either side and do fine. And of course continue to pray for his swallowing ability to develop. Thank you all for your prayers!
“And the power of the Lord was present to heal them.”
– Luke 5:17
Day 63 – Tue, May 1:
11:15 a.m. Update: They wheeled Charlie back about 30 minutes ago. They said both surgeries went great! His anesthesia is wearing off now so he’s waking up and a little restless. They’re putting him on drip morphine right now – starting with a heavy dose and then they’ll taper him off. They’ll be doing IV nutrition today and then start his feeding via the G-tube tomorrow… So happy it all went well. Thank you all for your prayers!! 🙂
10:25 a.m. Update: Nurse just popped in and said they’re all done and he’ll be back up here in like 15 minutes.
9:45 a.m. Update: The nurse just came in and said she got off the phone with the surgery team who said the first procedure, removing the devices, went well. Now they’re working on the G-tube surgery (which usually only takes about 30 minutes).
9:30 a.m. Update: Charlie went in for his second surgery around 7:45 a.m. and is expected to be in the operating room for about 2.5 hours. I got to the hospital at 7:00 a.m. this morning and talked with the surgery team, signed a consent form and answered some standard pre-surgery questions like, “In your own words, what are we going to be doing today for Charlie?”
“Well, the plan is to remove the distractor devices that are in his jaw and then get a G-tube inserted into his stomach,” I said. They also checked my wristband twice to make sure it matched Charlie’s so they knew they had the right baby. They’re so professional and thorough here which I really appreciate – especially on days like today.
When I walked into his room this morning he was crying and there were about 4-5 nurses and doctors moving around getting everything ready for his surgery. I walked over to him and when he saw me he settled down a little.
“We stopped his feeding at midnight so he’s probably hungry,” the nurse said. I agreed. He had that give-me-some-food look on his face. After he realized I wasn’t going to sneak him any food he started crying/yelling at me too!
I realized he had a stinky diaper so I changed that but he kept crying until… I found his Fish Friends!! As soon as I showed him his Fish Friends he stopped crying immediately and then fell asleep within 2 minutes. See photos below:
Prayer Requests: Pray for a successful outcome to today’s surgery! Pray for the surgeon and his team to do an excellent job and for them to be 100% on top of their game today. Pray for Charlie not to be in too much pain and for his recovery to be quick.
I’ll post updates at the top of this post as I get news about his surgery.
Day 58 – Thu, April 26:
Bigger & Stronger
Update: It’s been a pretty mellow week for Charlie. He’s still making progress when it comes to closing his mouth more, which is an important step toward him learning to swallow, so we’re excited about that. But other then that there hasn’t been a lot of change since my last update 6 days ago.
He is getting bigger and stronger every week. Today he weighed in at 11 lbs 9 oz. And he’s also kicking his legs and moving his head around more. So other than the swallowing, all his other development has been normal.
5 Days Until Next Surgery
They took Charlie to get x-rays today to assess his jaw in preparation for his surgery on Tuesday. This was just a standard pre-surgery procedure they always do. We’re happy Charlie will get the distractor devices removed from his jaw and the NG tube out of his throat. I think getting those two things out of his mouth will help accelerate his learning to swallow process. So May 1st is a big day for him and us! And he’ll of course need a few days to recover after surgery. So next week will be more of a convalescing week for him with more rest and less physical therapy sessions.
Prayer Requests: Pray Charlie continues to make positive progress with his mouth closing more. It’s still open more often then it’s closed, so pray that changes. He’s certainly making progress in this area, we’re just praying and looking forward to the day his mouth is closed most the time. This will be a major milestone for him because he needs to close his mouth in order to swallow. I know he’ll get there, and I feel it’ll happen soon, so lately when I pray and think about this I find myself feeling happy as I anticipate seeing this prayer answered! Thank you all for your continued prayer support for Charlie!
“…for the joy of the LORD is your strength.”
– Nehemiah 8:10
Day 52 – Fri, April 20:
Update: Charlie had a great week. He’s making good progress in every area – including his cuteness factor as you can see in the picture above. 🙂 He’s been closing his mouth a lot more this week and been having his therapy sessions almost every day. There hasn’t been much news to report on so that’s why I haven’t posted on here in the last 4 days. But just wanted to check in and let you all know he’s doing well. We’re still waiting for him to start swallowing normally. We know he’ll do it, he’s just got to figure it out.
Next Surgery May 1st
Charlie’s next surgery is scheduled for May 1st. That surgery will be to remove the distractors that are in his jaw. That’s the hardware they used to extend his jaw. And since they’ve been talking about replacing his NG tube with a G tube we decided to just have that done at the same time. So that will be one less time he’ll have to get anesthesia by combining those two procedures.
We’re looking forward to May 1st because we think it’ll be good to have the hardware out of his jaw and the tube out of his nose/throat. We believe both these things interfere with him trying to swallow, so it’ll be nice to get those things out of the way.
Staring Contest with Emma Grace
The other night Emma and I had staring contests while she was holding Charlie. Lacie laughs at us because I won’t let Emma win, so we stare at each other forever until her eyes start to water. Emma wins this time because she starts talking smack to me and makes me bust up laughing!
Prayer Requests: Pray Charlie continues to make progress with closing his mouth and starts to swallow regularly. Pray his infection continues to stay contained like it has and that he will have minimal side effects from all the antibiotics he’s been on. But most of all just pray he “flips the switch” and starts to swallow!
Day 48 – Mon, April 16:
Update: I snapped the pic above about 5 minutes before we wheeled him down to get his Swallow Study done today. The good news was he had a great night sleep last night and this morning so he was nice and rested for the study.
So at exactly 12:05 p.m. we wheeled his little crib down to the basement level of Randall where they do all the scans. I watched Charlie’s eyes as we rolled him down the hallways and he seemed to enjoy the scenic drive through the hospital. He didn’t cry at all, he just looked around a bunch. I think he likes getting out of that room (who can blame him, right?).
The Swallow Study
The NICU team let me join them. There were six of us in the little room, so I just did my best not to get in the way. After they got Charlie all situated in his seat they started the scan.
There was a monitor next to him so I could see everything going on inside his mouth and throat, it was really fascinating. I asked for a copy of the actual video but they didn’t know if they could share it with me. But here’s an example I found on YouTube of what a swallow study looks like:
Charlie’s study only lasted 39 seconds because, unlike the video above, he wasn’t swallowing completely. They found this out because when they put a couple drops of barium (which is the chalky white substance they mix with water for the x-ray) down his throat, they saw him aspirate. In other words, he breathed it down his airway. So they just did a couple more things real quick and then ended the study.
Swallow Study Insights
Several hours later Lacie and I met with David, the speech therapist, and Tasha, the occupational therapist in one of the private consult rooms here in the NICU. They played the footage from the study and showed us the images and explained, in great detail, what was happening and what wasn’t happening yet in Charlie.
“It’s still a mechanical puzzle. It’s not that he won’t or can’t swallow, it’s just going to take time,” David said. “You can see those drops get to about right here,” as he pointed to the image, “But then he aspirates. He’s not protecting his airway right there, so that’s why we didn’t go further.”
We spent over an hour talking about the study and where Charlie’s at right now. And the way I understand it is that he’s doing about 80% of what he needs to do to swallow. His tongue moves toward the back of his mouth and something (I forget the medical name) is even contracting, which are all necessary stages in a normal swallow.
But after that is where he’s struggling. Because what should happen next is that his vocal folds should close to keep food and liquids from entering his airway. The larynx should rise inside the neck and the epiglottis should move to cover it, which should provide even more airway protection.
So in other words, he’s “almost” swallowing. But since almost only counts in horseshoes and hand grenades, we need a complete swallow for it to work.
“He just needs to flip the switch and he’ll be there,” David said. He told us he doesn’t think it’s a neurological issue but a mechanical one. And he also talked about how it may be easier for him to close his mouth once he gets those distractor devices removed, which is scheduled for May 1st.
The bottom line is that nobody was really surprised about the results of today’s study. We all knew he wasn’t swallowing regularly yet. So it wasn’t going to be a traditional Swallow Study. But we just wanted to get a better idea of what’s actually going on in there to establish some baselines. And some of the things they saw were encouraging, like the early swallow stage movements. But it’s also clear that he’s not ready for any liquids yet (other then a few drops they can use during his therapy times). Like David said, “He just needs to flip the switch” so he can start swallowing normally.
Prayer Requests: No surprise here, right? Our prayer is for Charlie to “flip the switch” and begin to swallow completely! He’s made great progress, which we’re grateful for. But he still has more to go until he can reach this next milestone. Once he can swallow he can manage his secretions well and then he can work on eating. So pray he starts to swallow!
“O Lord my God, I cried out to You,
And You healed
– Psalm 30:2
Day 44 – Thu, April 12:
First Hall Walk!
Update: Happy to report that Charlie has done really good the last two days! He’s been closing his mouth more just like he was last Friday. So that’s super encouraging. Today was also a big day for him because he got approved to venture out into the hallway. So we unplugged him from his monitor and made our way around the NICU. Charlie seemed to really like it, he was wide-eyed looking all around at everyone. He was also moving his legs all around like he was ready to run or something!
Doctors Say Yes To Chin
Strap (But Charlie Says No)
Yesterday we officially got approved to use the chin strap to help Charlie’s mouth stay closed. But it wasn’t long after we put it on that he reached up and yanked it off! Oh Charlie boy, you’re hilarious! We go through all the trouble and you’re just like, Come here, I’ll show you a chin strap! 🙂 So we put it on when we can. Like 30 minutes at a time. Usually when he’s sleeping.
The doctors ordered a swallow study for Monday morning. So they will take a closer look at what he’s actually doing when he tries to swallow. It’s scheduled for first thing Monday morning.
Prayer Requests: Give thanks for the progress Charlie’s made the last couple days. Continue to pray that he closes his mouth more and more and that he starts to swallow more too. We’re so thankful for all the good things that are going on and we appreciate all your prayers! Thank you!
pray without ceasing,
in everything give thanks;
for this is the will of God in
Christ Jesus for you.”
– 1 Thessalonians 5:16-18
Thank you for your prayers!
Feel free to leave a comment, prayer or any words you’re hearing from God in the comments below! We appreciate everyone’s faith-filled prayers! With God all things are possible. We know it’s God’s will to heal and that He’s given us the opportunity to partner with Him in prayer.
“Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.” – Mark 11:24